Dear Lupus,
We've lived together for nearly five years now, our cohabitation uncompromising and you, the uninvited guest illegally squatting in my world, my safe haven.
You have nearly all control in every decision I now make and cause my husband to worry every minute of every day if i'm alright. Notice I said nearly then, I will always have final say, there will be days when you win, but not because I am defeated, because I am fair player and know when is the right time to take the upper hand. You however are ruthless in competition, reacting violently in only gaining second place. Attacking with childish defiance in an unprovoked assault, craving attention and punishing my body with your selfish needs.
It's a tumultuous relationship you and I, we've had our highs and been to the depths of low. But ultimately it's all your fault.
The amount of anger I feel for what you have done to me and my life will last all my born days. It rages every day in the pit of my stomach so much so that if I think about it too long I could scream until there was no breath left in my body. It's an anger that no shouting, hitting or counselling will subside. It's buried deep inside clinging into every cell in my body, a lot like you do really.
At times everyone feels anger, resentment or envy, but I find myself jealous of the oddest things. You make me envious of other peoples health, their ability to eat and drink what they wish, to go to work full time and have the energy to go the gym or fitness class. You have raised the green eyed monster and let him run free.There are so many reasons to hate you if I were to write it down I would run out of pages in a notebook, a endless ream of bitter rantings that could never really truly express the heartache you have caused me and my family.I would never indulge myself in such a task more than what I write today, it would become beyond cathartic and become torture.. and as you know you challenge me enough every day. To unleash in such a way would damage the positive spirit I use daily to remain a functional member of society, a loving wife, daughter, sister and friend.
Yes you have changed me beyond recognition, very little of the previous me remains, it's hidden under layers of experience and challenges I have had no choice but to face because of you, there is a hardened shell exterior but a weakened inner.. A complete role reversal of my former self.
Lupus, you have challenged my every being and continue to do so everyday, only you and I know how it truly feels to live and be this disease everyday, but you do not have to face the world and it's questioning faces, the doctors with no answers and eat the awful hospital food. You don't answer for the consequences of your actions nor clean up your own mess.
I am tired of being tired and sick of being sick. I hate the bags under my eyes and the scars on my body, I am alone in this war a single soldier in a minefield with a dent in my armour and a hole in my boot. I am unprotected yet experienced, a lone militant estranged from the systems designed to protect me and it's a solitary role to have.. it's very difficult to come to terms with the fact that your own body doesn't want to be you, that the only part of your body designed to protect you wants to kill you. You've never felt so unwanted when your body doesn't want itself.
The questions you have raised have made me challenge my whole belief system, I ask for much more purpose to my life now and want to know the reasons behind me being selected to follow this path, for there is no other reason for me to understand this insanity than to conclude I am paying a higher price for something. Having you in my body is like serving a prison term for a crime I have not committed, yet there is no retrial and no appeal, this is a life sentence and there's no certainty of parole.
Whilst hating every aspect of you, I am divided. I cannot now imagine my life without you in it nor would I turn back the clock.. you have not made my life complete but left gaping holes I need to fill in, but by twist of fate I am a better person with you in it. The hospital stays and the needles in my arms have taught me strength, the hours, days and months laid in bed have taught me perspective and the value of life, the cruel actions of those who sought to find profit and personal gain from my illness have taught me confidence and the love from my family and friends tell me I am valued. I am no longer a doormat, a pushover, a crybaby or a cynic. Whilst I grieve for those days filled with energy and carefree direction, of no pills or prescriptions, of no appointments or sick leave, in an obscure way I owe you a debt of gratitude.
Regards,
Claire
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